I am going on week 6 of dealing with health crises of my folks. My mom is being discharged from the rehab unit on Friday and I do think she is ready. She made amazing progress in PT and OT. Th plan is for her to go back to her IL apartment on her own for a bit but they want me to stay for the first three days (I love how the local worker just assumes I can rearrange my life to move in for a few days, after rearranging my life and job for the past month and a half!)
The issue is, what do we do with my dad. The therapists have said that mom cannot manage his care any more. The IL side cannot support dad’s insulin management. We can hire private RNs for $50+ hour for 12-14 hours a day or consider moving him or both of them to the personal care side.
It seems to me that moving them both to PC is the only real option. Mom does not need PC at all, but it is the only way to keep them together. Dad is unhappy and uncooperative not living with mom, so the hope is that he will calm down in PC.
The downside is it is going to really restrict mom’s lifestyle to move to PC. Plus it will be much more expensive than the IL costs.
Again I am stymied thinking about how most people handle these situations. I have basically gone to 1/4 of my work schedule and have not done much of my other home life tasks (laundry, bills etc) as my daughter has picked up an amazing amount of slack.
My parents do have some savings for this and an insurance settlement from the accident that precipitated this whole mess. But it isn’t nearly enough to compensate them for the pain and suffering they have had to deal with since dad was hit by the elderly driver. And I don’t know how long their money will last depending on how they decline with age. Terrible way to have to plan out the next few years . . .betting on which parent will get sick first
@surfcity, I don’t remember all the details, but would you be able to find a CNA or LPN for lower cost? Does your dad require more care than insulin management? If IL would be a healthier environment for your mom, and if they/you can sustain the cost, it might be the better choice, at least until it is no longer feasible at all.
@surfcity, am I correct in remembering it would be a relief to your mom not to live with your dad? If your mom does not need personal care, I would not move her there. Perhaps as part of her “freedom,” she can visit your dad frequently which might help calm him. Having them in separate places would help with your earlier fears to him exhausting her. The expense of such an arrangement is steep, but I think it would be less than both of them in personal care. Any suggestion from the director of the facility and/or nursing?
I’m sure you have done this, but perhaps your dad’s insulin regimen can be simplified? Maybe allow higher blood sugars to avoid hypoglycemia? I have few elderly patients who require complicated insulin regimens as it has shown to be “healthier” to allow for higher blood sugars.
My parents are very co-dependent. I don’t think the one would be capable of living alone without the other. I suspect they will both be in a nursing home with any major medical crisis with either one.
@runnersmom According to the CCRC, aides and LPNs will not be allowed to test sugar and estimate insulin. Even where he is now, on the sliding scale, the RNs often have to call the MD backup if he is higher or lower than the range for a given meal. He has become a brittle diabetic after his brain injury.
The social worker did allow that if we wanted to train a friend of the family to administer the insulin, that was on us. But any hired service would want an RN with MD back up and I cannot see paying an RN to sit around and babysit dad in order to test his sugar periodically and then give him insulin at meals.
Dad really doesn’t require any other assistance. If he did not have diabetes or if he did not have a brain injury he could live in IL. The combo is the problem.
@GTalum I am going to have to consider either moving them into the same PC room/suite or maybe having dad there and mom in a studio IL apartment. (They are currently in a 2BR). Mom doesn’t think dad will be very compliant with the staff unless he is with her and she feels so guilty that is he so upset due to his thinking being muddled from the injury. She keeps saying, “I married him in sickness and in health and I should be the one taking care of him.”
It was very hard for her to hear the social worker tell her today that the staff does not recommend her living with dad again and certainly does not think she can manage his condition.
I also have to think about moving them to a PC place closer to me, but that will make them super dependent on me as they have a ton of friends in their current location plus church and other volunteer connections.
I would think the SR living places would be used to having diabetics that need some assistance and am honestly surprised at how difficult this is. Many SRs have varying degrees of mental impairment, especially as they age.
The idea if moving them away from their friends and community roots sounds like it definitely would be tough on you AND them. I’d sit down with their current facility and ask them what options have worked well for other residents with similar issues.
@surfcity, thank you for the details. I’m sorry that option won’t work in the CCRC. I know when my dad was living at home post-stroke (he was a diabetic), the aides could monitor his sugar if my mom was not available. You are in an untenable situation and I understand your mother’s response as mine would have (and did) respond the same. Sorry you’re dealing with this.
@surfcity , your posts are breaking my heart. Sounds like your family was prepared for a lot, but how do you prepare for this kind of blow? I’m sorry you are having to deal with these issues.
the problem is with dealing with various state regulations, the regulations the facilities place on themselves, etc.
There is a patient in our facility, that if he was my dad, he would be moving in with us. He doesn’t have that much on the health side, just needs some physical help and oversight. There is almost a $2K/mo gap between their income stream and what the facility the family is looking at. Perhaps the sons/their wives will go to a plan B.
reminds me of family friends in Switzerland who have a wonderful lady who cares for them in their own home, and it is a win for her because she earns more than her home country and she loves her situation. They pay half what a facility would cost for one of them, and their quality of life is very good. she is like a daughter and she treats them like family.
@surfcity can correct me, but I recall that her father has Type 1 diabetes, which is a very different disease from Type 2 diabetes despite the similarity in the names. That would explain the challenges she is facing in figuring out the appropriate care for her parents.
@surfcity, does your dad have a continuous glucose monitor?. The DexCom G5 was very recently approved for coverage by Medicare. Also, Medtronic’s hybrid closed-loop artificial pancreas is due out very soon, to be closely followed by some competitor devices. PM me, if you want me to send you additional info.
@“cincy gal” yes, he is Type 1. Very well controlled with the pump before being hit by a car 3 years ago and sustaining a brain injury.
The senior living community is mostly geared toward IL. They can deliver oral meds and so forth to residents but insulin requires specialized knowledge. An aid can take his blood sugar reading but they do not want an aid interpreting the results. For example, if an aide takes a reading and it is 59, someone needs the knowledge that dad needs some glucose followed up with protein pronto. Or likewise if it is 102 before bedtime, the caregiver needs to know how much of a snack to give dad so he doesn’t get too low in the middle of the night. It’s an art, not a strictly numbers game.
Continuous glucose monitors have been suggested before but from what I read they do not replace finger sticks. I imagine the benefit is they can sound an alarm if one gets too low.
The CCRC has had seniors with dementia or other cognitive issues. If they need monitoring of meals and sugar levels however they need to be in PC or the nursing unit. Or perhaps they live with a spouse who can manage their meds, the way my mom did before getting sick. However it was very wearing on my mom and I believe contributed directly to her aortic dissection because I think her blood pressure was going too high trying to manage dad all day long.
It really is a perfect storm of conditions. Thanks for all your warm thoughts. It’s been very difficult to navigate as an only child. I have had to be down there several times a week, often on a day’s notice for meetings and so forth, and to pick up or deliver laundry, talk to doctors etc. Obviously if I did not have a flexible job something would have had to give.
So sorry to hear about your parents current struggles. I remember when you posted about your dad’s accident. Are there any other facilities near your parents that could handle the monitoring and medical needs that your dad has?
Wow @surfcity. This is really a tough situation. Can a private sitter be hired to help manage your dad’s insulin? Maybe as an extension of and in collaboration with your mom? I understand that the agency used by the CCRC cannot manage this, but can someone, for example a church member, be hired privately to collaborate with your mom? A friend of mine decided to remove her husband with Alzheimer’s from his care facility and instead, hired her favorite caregiver from that facility to work with her to meet her husband’s needs. Another elderly church member who lives at a CCRC (independent living), with help of his children, hired caregivers (they didn’t have official licenses) to help him care for his wife. This way, she stayed with him at independent living till her recent death.
My mom wrote me a check recently. It bounced. This is the second time it’s happened, and it is NOT like her. I’m worried about her. She’s seen her doctor multiple times, but he can’t find anything wrong. She is 78 and in good health otherwise. She’s lost a lot of energy, though. Ugh.
@surfcity, the newest DexCom CGM, the G5, is FDA approved to make insulin decisions without finger stick confirmation. It requires 2X/day calibration with a finger stick. DD is very pleased with this newest DexCom version.
My Dad has been in “Memory Care” for 7 months now. It was a new Memory Care unit inside an established Independent/Assisted Living facility. He was the fourth resident and now they have 16. He LOVED the first Activities Director, but she moved out of state and he doesn’t have the same relationship with the new one. My dad still talks about moving out every time I go to visit. I feel like he is fine most of the time, but seeing family reminds him of his life before. Showering continues to be the biggest problem. Now he says that he will die if he takes a shower. He does let them wash his hair in the sink. It took a long time but my sister and I were finally able to get control over his trust and medical.
@tx5athome, does your father’s facility have aides that give the residents showers? With a lot of dementia patients, someone else has to get them to take a shower, help them and so forth. Memory care units should already know how to get reluctant residents to shower, because it’s a big problem.
@surfcity, nothing I can think of too help but here is a cyber hug {{{surfcity}}}.
@tx5athome , great news that you gained control of the trust. It took me a bout a year to sort out Mom’s financials and run everything out of the trust. But now it is simple and is humming along. Plus the tax lady is able to distribute all the income to Mom so that there are no taxes. When Mom dies, I know the trust tax rate will be huge and I’ll have to (along with my bro) wrap it up ASAP to avoid those big taxes.
@“Cardinal Fang” yes, my Dad’s place has aides to help him but he is resistant. Occasionally he agrees to take one and about 3 weeks ago they kind of forced him to take a shower. He got Gout in February and seems to think showers are bad for his feet.
Yes @GTalum we could definitely hire our own caregivers that we train. I am obviously not an RN but I have learned how to manage dad’s insulin. That is kind of an overwhelming thought to me, to make sure to have people trained and scheduled every day of the week etc.
I saw a very nice PC place near me (forgive me if I am repeating myself here) and I can see how easily dad’s meds could be managed in a PC environment. It had a 2 BR sunny unit available and it is a mile from my house or so.
Mom initially did not want to move (again) and I totally understand that. But I don’t think she is remembering that she is only going to get more frail as time goes on and dad is going to do the same. It would be so nice for me to have them near me but that feels a little selfish on my part.
The PC room that their current place has is very small, basically a dorm room set up with a window overlooking the heating and AC mechanicals. It is on the memory care floor so the residents are more “needy” than my parents current condition.
I hesitate to look for a new PC facility down near them, because I feel like I might be just pushing off an inevitable move closer to me when they do being declining again.
@tx5athome - I feel for you on the showers. Since my dad has been in the nursing wing, he has resisted taking showers, something he needed no assistance with in IL. I also do his laundry and sometimes I am concerned about the ratio of dirty underwear vs socks vs undershirts. They certainly aren’t equal!!
